Breaking records over here!

Oliver is at the end of another steroid pulse, which means he is irritable and not sleeping well. In turn, Sean and I are irritable and not sleeping well. Sean stayed up with Oliver most of the night and at 4:00 am, when Oliver was FINALLY asleep in his crib we just knew the nurses or CNA's would need to come in for something and wake our over tired baby...so we posted this sign on the door: 

Dex is short for dexethazone (the steroid Oliver is on). It worked beautifully and Oliver is STILL sleeping as I write this! Thank you nurse ninjas for helping our baby rest!!

On to the best news-Oliver has set yet another record with his platelets...drumroll please...102,000!!! We are so thrilled!!! The other levels I've been talking about have all stayed the same or improved, but nothing has gotten worse! He is doing so well :) :) :)

I had the opportunity to give blood yesterday for the first time since Oliver was born, it was so rewarding to give the gift Oliver has received so many times to someone else-you can only donate blood every 8 weeks, but platelets can be donated more frequently and it just so happens I have the ideal blood type for a platelet donor! Thank you to everyone who has donated-it's such an amazing and priceless gift of life...So many of the kids here are transfusion dependent (including Oliver) and their lives are literally saved because of blood products. 

Well, that's that! Oliver is all tucked in, making platelets in his sleep :) I think I will read the paper! Happy Saturday :)

A new treatment plan!

*note* I thought I posted this on Thursday (2 days ago)-just realized it was never posted...apologies for the back to back updated :/

We met with some of Oliver's medical team today and have developed a new plan for Oliver's treatment. He is currently getting the etoposide (IV chemo) once a week and the dex (oral chemo) every two weeks. He is responding well (meaning blood & platelet counts are staying up longer and ferritin, IL-2 and NK cell function are retuning to normal) someday soon we will try doing the etoposide every two weeks with the dex...if his levels don't start getting out whack that would indicate that his HLH is infectious. If his HLH is genetic the lack of chemo would allow the surpressed HLH to gain strength and flare up...infectious HLH means no transplant-so that's what we're hoping for!!!

4 months old today!

I can hardly believe everything that has happened in the last 4 months, but here we are! Oliver has continued to baffle doctors and his case was taken to a conference today with 10 other hospitals. Sean and I will meet with out team here at Seattle children's tomorrow to discuss future plans, treatment and transplant. Meanwhile Oliver is smiling and snuggling and rarely complains...he's such a tolerant little guy! 

Liver biopsy results!

Oliver's liver biopsy showed no signs of disease! And there was no evidence of HLH in his liver (he still has HLH, it's just not effecting his liver) :) They did see some scaring that was caused by trauma (IE infection)...the liver specialist believes strongly that the liver was being attacked by the HLH early on, but that we have suppressed the HLH enough that it is no longer hurting his liver. His Doctors believe his liver will eventually heal it's self and he probably won't have any permanent damage...good news indeed!

Red blood rocks!

Oliver is having another red blood transfusion today-just a reminder of how many times donors have saved our sweet Oliver's life. I could never be thankful enough to everyone who's donated blood products...not just for our little fighter but for all the transfusion dependent people out there! Thank you!

We have realized that we may be forced to make a difficult decision about Oliver's treatment sometime in the near future. If Oliver responds well to his chemo we will have to decide whether we believe he's cured or if we believe he's in remission...to transplant or not to transplant? Oliver's case is going to be presented at a conference with 10 major hospitals next Wednesday and on Thursday we are meeting with his medical team to discuss our future plans for him...not much we an do except wait for more information...each test and each new Doctor's brilliant mind adds a new peice to the puzzle. For now we just hold him and love him and take in the sweetness that is all his own. 

Something to keep our hopes up...

Oliver is finally well enough to tolerate full doses of chemo. He started with just 1/4 doses and worked his way up as his liver could tolerate it. The last two chemo infusions have been at full dose and when we checked his HLH labs he was responding beautifully! I'm going to back up and review a couple things-there are two types of HLH, one is infectious-the other is genetic. Infectious HLH is cured with chemo treatment, genetic HLH is cured with a bone marrow transplant. Both are fatal 100% of the time if not treated promptly. Fortunately for us they are both treated with the same drug and Oliver's doctors started treating him before they were even sure of his diagnosis...when he was just weeks old! Anyway, when a baby is born with HLH it is almost always genetic, so we have been running genetic tests since the day he was born trying desperately to find a gene that would explain his disease. To this day we have been unable to identify one. When the latest HLH tests came back we discovered that Oliver's IL-2 receptors have almost returned to normal, and his ferritin levels (which have always been too high to chart-over 10,000) are under 5,000! Still a long way from normal, which is less than 200, but a HUGE improvement. But the most promising test result is that his NK cells (an important part of his immune system) went from non-existant to having some that didn't do their job and now??? He has them AND they are working properly! The reason this is such great news is that it is unlikely that we would see such remarkable changes if genetics were the reason for Oliver's HLH...so here we sit hoping and praying that Oliver responds so well to the chemo that we can avoid transplant!!! Yet another reason to keep smiling!

Platelets, platelets and more platelets!

Oliver is responding very well to the chemo! The treatment has suppressed the HLH enough that it is not destroying his cells nearly as fast as it once was. We are happy to report that Oliver's platelet level reached a new record today-81,000! With all of the positive changes we're seeing in Oliver's weekly HLH tests his doctors have decided he may not need all 21 weeks of etoposide (chemo) treatments. We are still getting chemo weekly for now, but this week we will hold the steroids. Sean and I are thrilled that we are able to hold the steroids because they make Oliver feel irritable and hungry-which makes him unhappy...so we get to skip that (for this week at least!)

Also, we are inching closer to transplant. I thought we were months away from transplant, but Oliver will get a liver biopsy sometime in the next week to determine if his liver can handle the pre-transplant chemo (which is different than the chemo he currently takes). If his body is ready the only other criteria he has to meet is age...he has to be at least 4 months old (May 28th). This means he could be getting his transplant in the next few weeks! We are excited and nervous at the same time!

Oliver continued his high flow wean yesterday and was close to being off respiratory support completely, but his belly got a little bigger yesterday, which took precious space away from his lungs-after a few hours he started showing sighs of fatigue...we increased the high flow again and PRESTO! Happy, relaxed baby ;)

When reading to Oliver this morning I noticed he has really started studying the pictures on the pages...he is so interested in the details now instead of just the contrast. He was looking at the pages intently for more than a minute...also, when he is upset and hard to sooth there are a few songs we sing to him that work like magic. I think we've got a creative boy on our hands ;) ;) ;)